Trying to delete your DNA test data

[Exterous]

There have been a couple of threads in ATOT about DNA tests and what happens to the data so I thought I would share this article where a reporter tries to get companies she sent her DNA to to delete her information. It turns out about as well as I expected - you really can't do it

https://www.bloomberg.com/news/arti...ng-your-online-dna-data-is-brutally-difficult

 

[nutxo]

I expect this will end up in the supreme court eventually

 

[Red Squirrel]

Yeah kinda how i figured it would go. Though I'm surprised they don't just say that it is deleted, but not actually delete it. That seems like it would be the easiest from the company's point of view.

Come to think of it, is there not a wya to get these tests done by a doctor? Or is it something they don't want to bother with? I know my doctor won't even do blood work unless there's something specific they are looking for. Which is kinda annoying since I would like to be able to get a full blood work done yearly so I can compare results and gauge my health. Like know if I need to eat more of something or less of something etc. Would be good to get DNA test done to also get an idea of any genetic stuff I should ensure to work on, like if a certain type of cancer is common in my family then perhaps there's something I can eat to prevent it so I can eat more of that, etc. It's too bad medicine is not more prevention based.

 

[lxskllr]

You're still taking their word for it. Anyone that trusts a company is a fool.

 

[Exterous]

I expect this will end up in the supreme court eventually

According to the article part of the problem is that a 1988 Federal law regarding medical research applies since they share your data with medical research organizations. Supposedly they assign a random identifier to that information but how well that is actually done is anyone's guess

 

[BarkingGhostar]

Exactly what proof do these companies require from you when submitting for testing? Are they asking for and tying it to your SSN? How can they know it is really yours in the first place. Also, one could just submit it using information from someone else with an incentive in mind, which would screw their credibility. Also, this seems like an opportunity for an Opt-Out clause up front.

 

[KMFJD]

http://www.abc.net.au/triplej/programs/hack/what-you-hand-over-when-you-get-a-dna-test/9720602

 

[zinfamous]

I just extract my own DNA samples, index it, and submit it along with our other libraries for NGS. That way, all the data comes back to me and I get to keep it on our lab server after separating it out from our experimental samples. Then I can do the same type of analysis on my own.

No, I don't actually do this, but I've long thought about doing it!